Adolescents' qualitative expressions of functional seizure illness representation.

INTRODUCTION: Adolescents with functional (nonepileptic) seizures experience challenges self-managing this mental health condition, especially at school where adolescents experience stress, bullying, accusations of faking seizures, and stigma. According to the Common Sense Model of Self-Regulation, adolescents' self-management decisions and outcomes may be shaped by their functional seizure illness representation (perceptions or mental depictions formed in response to a health threat). However, current research has only explored adults' functional seizure illness representation; little is known about adolescents. The aim of this study was to explore adolescents' expressions of illness representation characteristics (identity, cause, consequence, controllability/curability, and timeline) when describing their experience attending school with functional seizures. METHODS: We analyzed qualitative data from 10 adolescents (age 12-19 years, 100% female) from the United States with functional seizures. Data collection occurred in 2019 via semistructured interviews about adolescents' school experiences. The theme of illness representation emerged without prompting adolescents to discuss illness representation or its characteristics. This study involved inductive analyses and magnitude coding of adolescents' unsolicited expressions of illness representation. RESULTS: All five characteristics of illness representation were mentioned by adolescents; however, not all characteristics were mentioned by all adolescents. Adolescents' expressions of illness representation characteristics resulted in the following descriptive themes: clashing labels and mind-body façade for identity, stress for cause, gains and losses for consequence, control/lack of control for controllability/curability, and no end of seizures in sight for timeline. CONCLUSIONS: Adolescents' expressions of illness representation reveal perceptions considered "threatening" within the Common Sense Model, especially those expressing lack of controllability/curability and condition timelines with no end in sight. The Common Sense Model offers a framework for understanding how these threatening perceptions may impact health and academic outcomes or change with intervention.

Adolescents' Perceptions of School Nurses' Role in Functional Seizures at School.

Adolescents with functional (psychogenic nonepileptic) seizures experience school-related struggles. School nurses are positioned to address such struggles. However, school nurses report having little education or confidence in their role of managing or responding to this mental health condition. Little is known about adolescents' perceptions of school nurses' role in functional seizure care. This qualitative study used semi-structured interviews with 10 adolescents from across the United States with functional seizures to explore adolescents' perceptions of school nurses' roles in functional seizure care at school. Results revealed school nurses, when present, play a spectrum of roles according to adolescents' perceptions, ranging from negative (harmful and uninvolved) to positive (being present, expressing care, and actively doing tasks for the student). These perceived roles shed light upon school nurses' lack of functional seizure awareness and opportunities to incorporate mental health interventions for adolescents with functional seizures in the school setting.

Understanding Contexts and Challenges of Information Management for Epilepsy Care.

Epilepsy is a common chronic neurological disease. People with epilepsy (PWE) and their caregivers face several challenges related to their epilepsy management, including quality of care, care coordination, side effects, and stigma management. The sociotechnical issues of the information management contexts and challenges for epilepsy care may be mitigated through effective information management. We conducted 4 focus groups with 5 PWE and 7 caregivers to explore how they manage epilepsy-related information and the challenges they encountered. Primary issues include challenges of finding the right information, complexities of tracking and monitoring data, and limited information sharing. We provide a framework that encompasses three attributes - individual epilepsy symptoms and health conditions, information complexity, and circumstantial constraints. We suggest future design implications to mitigate these challenges and improve epilepsy information management and care coordination.

Adolescents' Perceptions of Functional Seizure Self-Management Strategies, Facilitators, and Barriers in the School Environment.

Adolescents with functional (psychogenic nonepileptic) seizures encounter many struggles within the school environment, including stress, bullying, stigmatization, and accusations of faking seizure events. Mental health nurses and school personnel are poised to support school-based self-management; unfortunately, to date, no evidence exists to detail effective school-based self-management strategies for adolescents with functional seizures. Therefore, in the current qualitative study, we examined adolescents' functional seizure self-management, perceived effectiveness, and facilitators and barriers using semi-structured interviews analyzed using content analysis. We interviewed 10 adolescent females aged 12 to 19 years. Themes of proactive (prior to seizure warning symptoms) and reactive (after seizure warning symptoms) self-management, involving protection, perseverance, and progress monitoring, emerged. Adolescents perceived proactive strategies as primarily effective, whereas reactive strategies were less effective. Adolescents identified school nurses and personnel, family, and peers as facilitators and barriers to self-management. Mental health nurses are positioned to provide care, co-create plans, and advocate for adolescents with functional seizures in collaboration with school nurses and personnel. [Journal of Psychosocial Nursing and Mental Health Services, 61(10), 19-27.].

Constructive communication patterns as related to relationship satisfaction, seizure severity, and patient activation among people with epilepsy.

PURPOSE: People with epilepsy (PWE) must manage their condition properly for both quality and longevity of life. Effective self-management is critical and can be monitored via levels of patient activation (i.e., a continuum of taking a passive vs active role in personal healthcare) and the presence/severity of seizures. One known influencer of self-management is the quality of one's intimate relationship, a documented area of major concern for PWE. Here we examined a critical facet of PWEs' intimate relationships-(un)constructive communication with their partner. METHODS: Using data from a web-based survey of 89 PWE, and regression-based mediation analyses, we examined associations with patient activation and seizure severity. We added further explanatory utility by examining relationship satisfaction as a mediator of those links. RESULTS: There were positive links between more constructive communication, more patient activation, and less severe seizures. The explanatory path of constructive communication to better relationship satisfaction to lower seizure severity emerged as a significant partial mediation (i.e., direct effect remained significant), while relationship satisfaction fully mediated (i.e., direct effect became non-significant) the link between constructive communication and greater patient activation. CONCLUSION: Our results provide insight into how relationship processes may impact the experience of epilepsy, including seizure severity and patient activation. Future research is needed.

Inflammatory Bowel Disease Self-Management: Exploring Adolescent Use of an Online Instagram Support Community.

The purpose of this qualitative study was to explore the challenges adolescents with inflammatory bowel disease (IBD) experience with disease self-management as expressed in an online Instagram social support community. Public Instagram posts between January and December 2019 were manually collected from an online IBD support community. To focus on adolescent self-management needs, only posts from Instagram users who (1) indicated they had inflammatory bowel disease, (2) were 13-24 years old, or were in middle school, high school, or college were collected. Using thematic analysis, authors independently coded and identified emerging themes about self-management. Of 2,700 Instagram posts assessed for eligibility, 83 posts met inclusion criteria. Six major themes about inflammatory bowel disease self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships With Others, and Symptoms and Complications. As the first thematic analysis of Instagram posts in an online inflammatory bowel disease community, results provide a crucial perspective of the concerns of adolescents with inflammatory bowel disease. Self-management challenges were wide-ranging and complex, underscoring the importance of IBD self-management in the adolescent population. Nurses should take a holistic approach to assess self-management challenges and tailor care to the specific needs of adolescents living with inflammatory bowel disease.

"It's hard!": Adolescents' experience attending school with psychogenic nonepileptic seizures.

Adolescents with psychogenic nonepileptic seizures (PNES) face many challenges in the school setting. Researchers have identified school stressors as potential predisposing, precipitating, and perpetuating factors for PNES. However, few researchers have explored the perspectives of adolescents with PNES regarding their experiences of attending school, where they spend much of their time. Therefore, this qualitative study employed content analysis to explore the experience of attending school as an adolescent with PNES. Ten adolescents (100% female, 80% White) were interviewed. With an overwhelming response of "It's hard!" from respondents, five themes regarding the school experience emerged: stress, bullying, accusations of "faking" seizure events, feeling left out because of the condition, and school-management of PNES. Underlying these themes were expressions of the need for increased understanding from and collaboration among peers, as well as the need for increased understanding from families, healthcare providers, and school personnel including school nurses. Study findings should inform future adolescent PNES research, practice decisions made by healthcare providers in the health and education sectors, education of healthcare and school professionals, and policy development and implementation.

Nursing in the spotlight: Talk about nurses and the nursing profession on Twitter during the early COVID-19 pandemic.

BACKGROUND: Nurses comprise the largest portion of healthcare workers and are integral to the COVID-19 response. Twitter has become a popular platform for the public, including nurses, to engage in pandemic-related discourse. PURPOSE: We sought to analyze the representation of the nursing profession and characterize nurses' experiences during the pandemic from tweets published in April 2020. METHODS: We analyzed tweets using natural language processing, Word Adjacency Graph (WAG) Modeling, and thematic analysis. Authors independently reviewed 10% of raw tweets in each WAG-generated topic, qualitatively analyzed tweets, and identified emerging themes. FINDINGS: Six themes emerged: Support and Recognition of Nurses, Military Metaphors, Superhuman/Spiritual Metaphors, Advocacy, Personal Experiences with Nurses, and Social/Political Commentary. Public perception of nurses was positive, but nurses conveyed harsh realities of their work. DISCUSSION: Findings highlight discrepancies in nursing experiences and public perceptions of nursing. Further research should accurately identify and convey the complexities of the nursing profession.

Small cohort of patients with epilepsy showed increased activity on Facebook before sudden unexpected death.

Sudden Unexpected Death in Epilepsy (SUDEP) remains a leading cause of death in people with epilepsy. Despite the constant risk for patients and bereavement to family members, to date the physiological mechanisms of SUDEP remain unknown. Here we explore the potential to identify putative predictive signals of SUDEP from online digital behavioral data using text and sentiment analysis tools. Specifically, we analyze Facebook timelines of six patients with epilepsy deceased due to SUDEP, donated by surviving family members. We find preliminary evidence for behavioral changes detectable by text and sentiment analysis tools. Namely, in the months preceding their SUDEP event patient social media timelines show: i) increase in verbosity; ii) increased use of functional words; and iii) sentiment shifts as measured by different sentiment analysis tools. Combined, these results suggest that social media engagement, as well as its sentiment, may serve as possible early-warning signals for SUDEP in people with epilepsy. While the small sample of patient timelines analyzed in this study prevents generalization, our preliminary investigation demonstrates the potential of social media data as complementary data in larger studies of SUDEP and epilepsy.

Hybrid Concept Analysis of Self-Management Support: School Nurses Supporting Students with Psychogenic Nonepileptic Seizures.

Self-management support has been identified as an effective nursing intervention for improving outcomes for people with chronic conditions, yet this concept lacks a clear definition. Furthermore, the concept has not been used in school nursing literature despite the clear connection between school nursing practice and tenets of self-management support. Additionally, the concept has not been explored in the context of difficult-to-manage mental health concerns, such as psychogenic nonepileptic seizures. A conversion disorder in which seizure events in the absence of abnormal brainwave activity result from stress, psychogenic nonepileptic seizures affect the quality of life and school experience for students experiencing them and could be addressed through self-management support. This hybrid concept analysis included a review of extant literature and semi-structured interviews with school nurses to ascertain a definition of self-management support in the context of school nursing using care of students with psychogenic nonepileptic seizures as an exemplar.

Social determinants of health associated with epilepsy treatment adherence in the United States: A scoping review.

PURPOSE: The aim of this paper is to share the results of a scoping review in which we examined the social determinants of health (SDoH) that are associated with anti-seizure medication (ASM) treatment adherence among people living with epilepsy in the United States. METHODS: Our review was informed by the methods of Arksey and O'Malley for a scoping review. A total of 3,826 articles were identified for reference through a literature search, of which 17 publications were deemed relevant to our scoping review. The final articles were mapped using the Epilepsy SDoH Conceptual Framework to identify gaps. FINDINGS: Our review suggests that there are multidimensional associations of SDoH in ASM adherence. The SDoH were interrelated. Race/ethnicity and socioeconomic status appeared to have major associations with ASM adherence. Several gaps in the literature were identified, including inadequately exploring the effect that each SDoH has on treatment adherence, and the methods used for assessment. CONCLUSIONS: Future longitudinal research to address the identified gaps would foster interventions that promote ASM adherence among vulnerable populations living with epilepsy.

The Impact of COVID-19 on HIV Self-Management, Affective Symptoms, and Stress in People Living with HIV in the United States.

COVID-19 has the potential to detrimentally impact HIV self-management in people living with HIV (PLHIV). Effective HIV-self management is critically important in managing symptoms as well as viral suppression. We examined the impact of the COVID-19 pandemic on HIV self-management, social support, social isolation, depressive symptoms, anxiety, and stress in PLHIV. 85 PLHIV were recruited from social media sites and completed an online survey. Data were collected between April 23 and 30, 2020. Participants reported increases in social isolation, depressive symptoms, anxiety, and stress and decreases in social support and overall HIV self-management from pre- to during the pandemic. Additionally, the Social Support domain and Chronic Nature of HIV domain of the HIV Self-Management Scale were also decreased from pre- to during the pandemic. The ability for PLHIV to maintain HIV self-management during this time is essential and HIV care providers should have plans in place to provide support.

Relationship and sexual satisfaction are associated with better disease self-management in persons with epilepsy.

Prior research has demonstrated that PWEs view intimate interpersonal relationships as personally important and as a substantive challenge in their lives. This is significant as high-quality intimate relationships have been linked with greater well-being and better healthcare self-management in other disease contexts. For persons with epilepsy (PWEs), self-management is critical for seizure control, lower mortality, and better quality of life. In the current study, we conducted the first known investigation into the quality of PWEs' intimate relationships and their self-management abilities. In a sample of 88 PWEs, using the Adult Epilepsy Self-Management Instrument, results demonstrate links between greater relationship satisfaction and sexual satisfaction with better self-management on seven of the eleven subscales: health communication, coping skills, social support, seizure tracking, seizure response, stress management, and wellness; satisfaction was unrelated to the treatment, safety, medical adherence, and proactivity subscales. Importantly, these results held while controlling for age, gender, social support, and presence of comorbidities. These findings provide some evidence of the importance of intimate relationships in understanding PWEs' healthcare management abilities. Given that intimate relationship dynamics have been shown to be highly amenable to intervention, this is an area of potential interest for improving self-management in PWEs.

Evaluation of emergency department-based seizure and epilepsy education: Exploring the need for early epilepsy self-management intervention.

Many people with epilepsy (PWE) present to the emergency department setting with their first seizure and must wait weeks or months to be seen by a specialized epilepsy provider. The time period between presentation of first seizure and entry into specialized care can be extremely stressful and precarious for PWE and their families. In order to achieve optimal outcomes, epilepsy self-management should be initiated as soon as possible, including in the emergency department setting. The purpose of this study was to review and evaluate existing epilepsy/seizure-related education materials provided to patients in the emergency room setting to determine the degree to which these materials prepare patients and their families for self-management of epilepsy, or potential epilepsy, during the interim between emergency department discharge and entry into specialized care. Twenty emergency department epilepsy/seizure patient discharge education materials were collected and evaluated using a rubric based on the framework of the Epilepsy Self-Management Scale (AESMMI). Materials were rated on a 0-3 scale based on the degree to which self-management education, resources, and skill building were included. The mean score of materials reviewed was quite low at just 10.4, with a score of 33 possible. Also concerning is that the materials scored lowest in the domains of social support, stress management, and coping, all of which are extremely important areas for PWE, especially in the early phases of the disease when patients and families are adjusting. Findings highlight the need for development of robust self-management interventions tailored to PWE in the transition period from presentation of first seizure to entry to specialized care.

Epilepsy self-management during a pandemic: Experiences of people with epilepsy.

The purpose of this descriptive study was to, from the perspective of adult people with epilepsy (PWE) and caregivers of PWE, explore the effects of the current pandemic and resulting societal changes on epilepsy self-management. Ninety-four respondents completed a mixed-methods quantitative and qualitative survey focused on their epilepsy self-management experiences during the coronavirus disease-19 (COVID-19) pandemic. Respondents noted significant disruption in epilepsy self-management. Lack of ability to obtain medications or see epilepsy providers, as well as increased stress, social isolation, and changes in routine were all reported as troublesome, and more than one-third of the sample reported an increase in seizure frequency since the onset of the pandemic. Suggestions are given regarding how to support PWE during future COVID-19 outbreaks and to better prepare PWE and their caregivers for any life-altering events, such as a pandemic, with robust self-management skills that will allow them to maintain the highest level of function possible.

An Integrative Review of School-Based Mental Health Interventions and Implications for Psychogenic Nonepileptic Seizures.

Millions of students with mental health concerns attend school each day. It is unknown how many of those students experience psychogenic nonepileptic seizures (PNES); however, quality of life, academic, and mental health outcomes for students experiencing PNES can be bleak. Currently, no authors have addressed potential school nurse interventions for students with PNES. Because PNES is a mental health condition and is often influenced by underlying anxiety and/or depression, an integrative review of school nurse interventions and outcomes for students with general mental health concerns was conducted. An integrative review resulted in the identification of 13 quantitative and 2 qualitative studies that met inclusion criteria. The findings from this review suggest school nurses, following principles from the Framework for 21st Century School Nursing Practice, play an active role in mental health interventions and should be involved in replicating and testing known mental health interventions to investigate their effectiveness for students with PNES.

The Projected Care Trajectory for Persons with Epilepsy.

Epilepsy is a complex neurologic disease that requires both medical management and self-management. People with epilepsy and their families complete many transitions throughout the health care system in managing this disease. This article reviews key transitions for people with epilepsy and discusses strategies for improving these transitions.

Development of a 10-Item Tool to Identify Advanced Practice Nurse Readiness to Prescribe Pre-exposure Prophylaxis.

Pre-exposure prophylaxis (PrEP), a biomedical tool to prevent the acquisition of HIV, reduces the risk of HIV in high-risk individuals by more than 90%. An online questionnaire was fielded from March 2017 to May 2017 to a random sample of licensed advanced practice nurses (APNs) from the U.S. state of Indiana. Discriminant function analysis was performed to reveal willingness to prescribe PrEP. Two discriminant functions were identified: Sexual Risk Assessment (r = .686), PrEP Barriers (r = .587), Evidence-Based Practice Implementation (r = .545), Community Awareness (r = .446), Perceived Risk (r = .356), and Organizational Climate (r = .346) were loaded on the first function, whereas PrEP Skills (r = .837) was loaded on the second function. The results suggest APN's willingness to learn and knowledge about PrEP-influenced implementation. Findings demonstrated that readiness to prescribe PrEP by APNs in Indiana could be predicted with a high level of certainty using identified variables.

Alcohol Withdrawal Assessment Tool: Validity and Reliability Testing in Acute Care.

PURPOSE/AIMS: The purpose of this study was to validate a tool to assess alcohol withdrawal in acute care patients. Study aims included (1) establish content validity, (2) examine criterion-related validity, (3) test interrater reliability, and (4) assess nurse usability. DESIGN: A psychometric research study was designed to evaluate the Alcohol Withdrawal Assessment Tool. METHODS: Validation was conducted using an expert panel to determine content validity. The Clinical Institute Withdrawal Assessment for Alcohol-Revised was used as comparison for the criterion related validity. Interrater reliability was determined by having 2 investigators simultaneously complete the assessment on the same patients. Usability was determined using a Likert scale survey. RESULTS: The average age of participants was 53 years, with a range of 27 to 81 years. Interrater reliability was supported by a κ statistic range of 0.61 to 0.6957, and content validity was supported by a content validity index of 1.0. Criterion-related validity was supported with a Pearson r correlation of 0.665 (P < .000). Of nurses surveyed, all answered agree or strongly agree to the usability survey. CONCLUSIONS: The assessment tool may be an effective alternative to utilize in the acute care setting. It is easy to use and drives frequency of assessment and appropriate pharmacologic treatment.